The CURE4/6 registry
Be counted. Be connected.
For rare diseases, numbers matter. Choose the path that fits you.
Choose your path
Patients & families
Have you been diagnosed with RNU4-2 or RNU6 retinal disease — or been told you carry a variant of uncertain significance (VUS) in one of these genes? Join the registry in about 10 minutes.
The registry survey is opening soon.
Clinicians
Have a patient with RNU4-2 or RNU6 retinal disease? Send them a secure link to join — they complete the registry themselves.
Researchers & geneticists
Contribute variant or clinical data, or discuss collaboration with our scientific team.
What to expect when you join
Joining is simple, private, and in your control.
- Takes about 10 minutes
- Your information is kept private and secure, HIPAA and GDPR compliant
- Register anonymously if you prefer
- Start now and finish later — your progress is saved
- Participation is voluntary and overseen by an ethics board (IRB)
- You choose how you’re contacted, and you can update or withdraw at any time
The CURE4/6 registry is powered by our research partner Aretetic and their secure DigitalCabinet platform.